Diabetes

This weekend it dawned on me how ordinary my insulin pump feels. I think I had built up the new visibility of my invisible illness so much that I imagined wearing this device would be the equivalent of a Presidential motorcade – it’d be hard to miss. But the truth is it’s just another thing to put in my pocket.

After my phone, Dexcom receiver, wallet, and whatever else I need in close proximity, my insulin pump isn’t that big of a deal.

Of course, I have the luxury of saying this because I’m a guy. It’s a bit of a challenge finding clothing that doesn’t include some kind of pocket. I see first-hand how managing an insulin pump as a woman presents its own unique challenges.

Sometimes I wonder if I’m better off remembering what life was like before my diagnosis. I don’t have many specific memories that are tied to food or a carefree lifestyle that didn’t exist before regular insulin injections and blood glucose checks defined my routine, so it’s not as if I can directly attribute a loss of life’s joys to diabetes.

I assume this kind of thinking, that diabetes is a thief, among the newly diagnosed. When the changes required to survive are still raw, it’s easy to draw immediate comparisons to a life that once was. I’ve lived with diabetes long enough that I don’t think about how my life has changed as much as how my life with diabetes has changed. I suppose it’s how I try to stay positive through all the easily-identifiable negativity. This Dexcom Continuous Glucose Monitor sure is great. Life with an insulin pump is a lot easier than managing insulin pen needles. The port light on my blood glucose meter is awfully handy.

Is it bad that I get excited at the mere sight of diabetes coverage in more mainstream outlets that simply “get it right”? It doesn’t matter what they’re talking about, but the simple idea that the topic of diabetes is reaching eyeballs of the un, or underinformed, makes me happy.

The prospect of categorizing those submissions makes me think about this blog and the range of emotions I’ve shared over the years. I know the early months (and years?) of chronicling life with diabetes was mostly filled with anger. I had a lot of confusion, frustration, and general not-happiness to get out in the open with the hopes of starting to better myself. Somewhere in the middle I found Dayle and emotional content of the blog likely shifted to calmer, more pleasant themes. I suppose that emotional output has largely been the same ever since.

I wonder if the emotional journey of most members of the diabetes online community follow a similar trajectory? So many stories from the newly initiated start with something along the lines of “I thought I was the only one…”, that fear and solitude can fuel all kinds of negative thoughts. But upon discovery of a community of people who “get it” and can empathize with your experiences, isn’t that usually when the flood of emotions begin? Because that’s when all the ugly stuff gets out of the way to make room for new, happy thoughts, right?

The validation that comes from sharing your experiences and hearing “me too” is too powerful to quantify, or qualify. It’s just fantastic. I know it’s impossible to provide that opportunity for everyone living with a chronic disease, but I want to do my part to make that “me too” moment happen for as many people as possible.

At the end of the day you’re alone, nothing’s going to change that. But the truth is we are more alone than them, yes we might have each other (diabetics), but we are alone. No one understands, not family, friends, not even we fully understand. Diabetes is too often overlooked, not understood, and many other things. I would never want nor need anyone’s sympathy, but for once I would like for someone to understand! What it’s like to take insulin, feel a low, a high, or even no what it’s like to sit through a health class that’s directed towards a diseases you have (even though they don’t know what they are talking about). We are all alone, but we are more alone than others. // Shared on My Diabetes Secret

What is courage? I think courage is in the eye of the beholder. As a diabetic I’ve never met nor seen anyone see diabetics as courageous people. I think that’s because we are courageous every day. Not by choice but by faith, so the next time you get judged, remember, we are all COURAGEOUS. // Shared on My Diabetes Secret

I noticed a few comments about “missing” the day or not being able to get as many posts as intended. That’s okay, folks. The idea behind the day is to rekindle the community building fire and remind everyone out there that you are not alone. We’ve never needed a day for commenting, but rallying people behind a cause (even one as silly as this) makes the whole concept a bit easier to understand and execute.

Of course, taking the time to comment on every single diabetes blog post every single day is not a sustainable effort. There’s too many of us. That’s okay. My hope is that coming out of a self-imposed comment on everything day establishes some sort of routine that results in commenting a little more often than you did the day before.

You don’t have to get to every single blog post. But if you’re looking to connect, or reconnect, #dblogcheck is one way to accomplish that.

So often we go through our lives focusing on the negative or simply not recognizing the positive. How often do you make a priority of leaving a positive review of something on Amazon or Yelp? How much more likely are you to leave a review if it’s going to be negative? How much more likely are you to tell Twitter or Facebook about a bad experience you had instead of a good one? I believe that commenting on these blog posts makes everyone feel better. Raising the collective spirit of the diabetes community is a goal all of us should have, regardless of how we achieve it. Considering how easily diabetes can break each of us down as individuals, walking away with any amount of positivity is going to take a group effort.

So thank you to all of you who participated. If you didn’t get to everything on Tuesday, that’s okay. Maybe set a goal to get to all of the posts by the end of the week? Maybe set a new goal to comment on at least one diabetes blog each week day? Maybe it only has to be one comment a week? I’m saying this in part to give each of you an idea as to how you might lift the spirit of the diabetes community, and also because I need to be better about commenting in general, too. I’m not immune to any of the observations I’ve made here. If we all do a little better, great things are possible.

It’s been a couple of weeks since I published My Chronic Disease Secret and offered a place for anyone impacted by a chronic disease a platform to anonymously share whatever secrets, fears, or thoughts they had. At the time I had questioned the lack of a “My Cancer Secret” equivalent to “My Diabetes Secret”, and eventually embarked upon building something not just for people touched by cancer, but the entire chronic disease community. While it’s too early to call this venture a failure or success, I’ve noticed one immediate trend that sets My Chronic Disease Secret apart from My Diabetes Secret: activity.

The amount of initial interest in MCDS (I need a better abbreviation) simply doesn’t compare to the initial impact My Diabetes Secret made. Maybe I didn’t do a sufficient job explaining the reasons behind its existence. Maybe it takes time for each community to discover a new digital outlet. Maybe a platform for all chronic diseases isn’t needed. Maybe I overestimated the potential for something like this. Maybe people surviving cancer aren’t using Tumblr to connect with their peers. Or, maybe I’m overreacting and two weeks is not indicative of what this effort will yield.

Despite all of those maybe’s, I think there is a bigger takeaway that furthers the assertion that diabetes community is a bit of an online outlier. We’re more connected and more active than most chronic disease communities. I’ve lost count at the number of times I’ve heard that the diabetes online community is the benchmark for patient engagement and interaction. That isn’t to say that strides haven’t been made through breast cancer or rheumatoid arthritis communities, but perhaps there are only a select few that can command the online audience and interactions as diabetes, breast cancer, and arthritis. Maybe?

To be fair, I haven’t spent days on end searching for patient blogs from the entire chronic disease spectrum. Then again, maybe I should. That would give me a better understanding of what is and isn’t out there, right? All of these assumptions, maybes, and perhaps’ are based on anecdotal conversations I’ve had over the past few years.

All this being said, I’d rather have a place for all and see it not get used than a place for some leaving those left behind to think they are alone. I’m sure My Chronic Disease Secret will find its place one day – it’s just a matter of time.

I want you to use #dblogcheck as a motivation to say hello to your fellow person with diabetes. This is just one way to make it happen.

Somewhat related, today has been designated as a Check In Day for the diabetes community. I’m encouraging everyone to leave a comment on every diabetes blog they read today. Even if it’s a simple “Check!”, say something. Use this opportunity to show how connected the diabetes online community truly is.